84, Awareness

I have always been fully aware of my failings … the PD diagnosis made me very aware of a new one …

My inability to cure Parkinson’s disease.

Now this may seem a harsh sweeping statement  … but it is realistic and truthful.

Now annoying people say (I am, but I don’t) there is no such thing as ‘can’t’ …

You know what I am going to say next …If I had a go at curing PD, aged 50, with no scientific knowledge… well I can’t be bothered to type the outcome.  Even the most optimistic will see this is ridiculous.

So rather than dwelling on this ‘failing’.  Since the moment I was diagnosed I have been harping on about awareness.

Now over the years many people have confronted me (some quite assertively) saying what is the point of awareness.  People have argued that it is a waste of time and is not actually doing anything. 

Btw Another of my failings is I am not a good debater.  So quite often I have tried to put forward my thoughts and reasons for awareness but the words come out all wrong and I sometimes feel a little intimidated, by someone saying ‘go on … tell me what is the point?’

Just a minute before I go on I just  want to write …

Everyone has different personalities and different ways of communicating there is no right or wrong way.  Equally doing nothing is also fine … the most important thing is not feeling  isolated –

I reiterate I personally cannot cure PD, but …

There are a lot of companies employing very clever people who have lots of knowledge.  

There are a lot of scientists out there waiting for the next ‘job’ . 

There are lots of extremely wealthy organisations, and individuals who have spare cash.

There are a lot of (probably) bored politicians and eloquent public speakers just waiting for a reason to get their soapbox out.

So a quick digression …. A moment on isolation

PD is isolating with many invisible symptoms, lack of understanding, lack of empathy, it is unpredictable and debilitating.  Also unlike other diseases in the whole global scheme of things not many people have it, and it is not fashionable. 

So (and I may confuse you now) actually most people are aware of PD, ie they know it exists.  But they are Not aware of what it actually does to a human being – after all people think it is just a tremor.  Even if you are aware I live with PD, then for maybe a third of the day I Look very tip top and ‘normal’, the other two thirds I am completely debilitated.  And actually unless I tell you, as I don’t have the PD calling card, a tremor, then how would people know?

Everyone is different but when my symptoms kick off, they do so without warning.  The rug is literally whipped away.  I cannot walk, mood dives, dexterity goes, even if I look well the invisible symptoms could be kicking off and as we don’t (yet) have ‘how we are feeling’ readouts scrolling across our foreheads – unless I tell people about the invisible symptoms they won’t know .  Actually (and I am harping now) even if I do tell them after they say ‘you look very well’ that I am constipated, have apathy and chronic insomnia unless you have it, you can try, but you won’t understand – harsh but true.

Sooooo the world needs to know that worldwide thousands (exact numbers difficult to guess) of early on set (diagnosed under 50) young men and women were living with a degenerative neurological condition, adding to the older people living with PD .  If pharmaceutical companies knew they could make even more money and get publicity and kudos from curing PD , and politicians had a slight sniff of the fact they might get the key to the door or enhance their political profile and popularity with the public if they were instrumental in gaining funding and pointing research to PD.  

And if the world  understood just how awful and debilitating PD  is ….  Then finding a cure  would become a priority

However (this is is the time for the big awareness word) Awareness is key.  And annoying phrases are actually less annoying here … from small acorns do big oaks grow, and a ripple travels a long way (well something like that)

So awareness  … I’ve said I can, but what have I done.  Now this is not earth shattering stuff but I hope that someone somewhere is listening .  If everyone with PD makes someone aware, does something … it can be something tiny … like telling the man  behind the cheese counter whilst buying edam that she has PD who knows that man’s uncle might be a neuroscientist or multi millionaire pharmaceutical investor – don’t snigger. In the same way film stars go to the toilet, neuroscientists will have uncles who work on cheese counters,

Now … I have not tied myself to anything yet, but my small micro attempt at planting and nurturing that acorn are :

And I know its not ‘the done thing’ but  yes I am blowing my trumpet … I am really  proud at what I have achieved …  a lot of people questioned why I have put my head above above the parapet.   Four people in particular have supported me throughout  … and continuing my tradition of not posting pictures of my food or mentioning names … fish and chips is all i am saying ….

Writing my blog and promoting it about living with early on set pd

Writing my fortnightly column in the local paper about early onset 17,000 words, 24 columns and still going 

Performing on stage with parkinsons my poetry

Me and the wiseish man giving talks to medical staff and local groups about living with PD.

Being honest about how I feel … if you don’t want to know how I am don’t ask.

Ps some people may find my writing jokey and flippant – i am not and it is not really – there is a method to my madness, – if I wrote my first blog brilliantly but it was really upsetting to read will people read more.  My strapline is 

Information by stealth .

A friend once said they felt disrespectful reading my blog because they laughed and it was on a serious subject , Perfect …. laugh and learn hoorah 

So all of this might or might not —-

Ultimate aim get  through to a scientist or investor and a cure

But as important –

let someone with PD know they are not alone

Educate friends/family

Not feel alone with this flaming disease

Waffle – no prizes for reaching the end 

So there you go

Over and out 

actually if you can cure pd then just do it please don’t wait politely to be asked —-

 

 

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